Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Monday, December 22, 2014

Hanging out

We got this awesome gingerbread train from our neighbors. Ry was super meticulous about doing hers, Gator wanted to fill his with candy, Eden and May wanted to eat all the candy... 
They turned out great for five minutes.. I am a novice gingerbread maker and hot glued the pieces together because frosting was not holding.. That didn't even hold on the little girls train car.. 

This morning at the BCOD (not just the crack of dawn, but the bum crack of dawn) we came up to the hospital for clinic. With Christmas on our regular clinic day we got to come on a Monday. Everything is stable. That is great, just a happy to be home and doing good time.. His antibodies have dropped again and we will be scheduling his Bortisamib treatments again.. It seemed odd today as I made clinic schedule into February because he was listed on February 7th.. Crazy to have waited so long. 
We bumped into Paul Cardall last week and he reassured my heart that sometimes you just have to surrender everything. It will come when we least expect it. 

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